Lucy May born 30th May 2004 suffered oxygen starvation ( Hypoxic-Ischemic Encephalopathy or HIE ) at birth and as a result has Athetoid Cerebral Palsy, Epilepsy, Visual Impairment and Quadriplegia. Lucy's struggle through life involves constant medical care, therapy and the support of those close to her.

Sunday, 30 December 2007

Christmas is over for another year. It was nice to spend time with my family and we all had a lot of fun. Lucy enjoyed the time even though she was struggling with a bad cold. She has deteriorated since then and as yet the antibiotics which she started on Thursday have not really worked. Her temperature keeps spiking and so is having intermittent doses of paracetamol to help control it. She has become quite sleepy and her cough is not showing any real signs of improvement. We have decided that if she hasn't improved in the morning we will take her back to the Doctors. There are plenty of nasty colds around at this time of year and she is unfortunately more vulnerable to them. She is also less equipped to fighting them. It just seems to take her a lot longer to recover. It is a concern that the antibiotics have not been so effective this time. I always worry about the number of times she has had them and how effective they will be in the future. Feeding time is a challenge at the moment with every mouthful causing her to cough and splutter. As a direct result our washing pile is rapidly growing and our tolerance to Lucy spitting food in our faces is being severely tested. At times like this life feels more difficult than it should and this is compounded by those unspoken Christmas thoughts which will linger for some time.

Christmas was a really good but at the same time it is on occassions like this that the differences we face with Lucy are magnified. Lucy is at an age now where she would have really started to appreciate Christmas. She would have been so excited to have a stocking in the morning, hanging from the end of her bed and a pile of presents to open under the tree. We should have been looking forward to the look on her face as she ripped open her gifts and to seeing her playing excitedly with her new toys. She should have been running around playing with her cousins and should have been able to sit at the Christmas table, maybe even pull her own cracker. Instead we have to do our best to make the day feel different from any other day, let her feel her presents before we open them for her, try and involve her when really she was probably not aware of what was going on. I don't know what got to me more, the feeling that she was missing out on the magic of Christmas or the feeling that I was missing out on seeing her enjoy it. I have tried to tell myself that she enjoyed Christmas in her own special way and that we did the best we could to make it a special day for her. This only helps to shroud the sad reality of Lucy's disabilities. I hope I am wrong and that Lucy is able to draw as much enjoyment from special occassions as I percieve to be normal.

Friday, 28 December 2007

After a hectic few days it is time for a catch up of the last few days. On Boxing Day there was a big family gathering for my side of the family. Lucy was still struggling with a cold and a cough. She was happiest being left to watch Christmas TV. Of course there were plenty of takers queuing up to hold her and cuddle her so we had a pretty easy time of it.Lucy was spoilt for attention and was happy to be passed from person to person the whole day.We were even spoilt with feeding. The one piece of advice that I read from "Contact a Family" that sticks is that whenever anyone offers help of any sort, just say yes. So my mother fed Lucy twice while we were able to relax and enjoy some normal time.Lucy was not quite herself and feeding has been especially difficult. She has a horrible cough and she seems to be struggling with swallowing. The cough is tiring her out which means she is getting more tired than normal.I think that she managed to get passed to everyone and get cuddles from everyone throughout the day. Unfortunately she was not at her best and seemed to struggle being upright. At the moment because of her cold she has more fluid than normal to deal with and is not managing to clear it very well. Normally she has a very good cough and swallow. We have started to worry that this reflex is deteriorating and if we are right then her oral feeding could be at risk. Hopefully it is just a cold and will sort itself out, given time.At the end of the day Lucy was ready for bed and enjoyed winding down with my cousins. She probably though all her Christmas's had come at once.My cousin Emma who doesn't get to see Lucy too much offered to put Lucy to bed which was nice for us and for Lucy. We had made Lucy a make-shift bed from an old cot mattress and her sleep system which we had brought from home. It looked really comfortable and I wish I was small enough to fit into it.Lucy did moan for a while but eventually succumbed and ended up having a reasonable nights sleep. We decided the next day that she really need to see a doctor to get her chest checked out and left for home in time to see our local GP. It was a good decision because Lucy is now back on Cefalexin and has been quite ill since we got home. I have spent the whole of today looking after her because she has been running a temperature (40 Deg +) and has hardly eaten. Her temperature has been up and her cough is definitely not getting any better. To top it all, just when I thought she was going to have a sleep this afternoon she was sick all over herself and me. Since then though, her temperature has stabilised and she even managed to keep down her supper. She has also not had any seizures which is really positive. With a bit of luck it will just turn out to be a bad cold and in a week or two she will be back to normal. Here's hoping!!!!!!

Tuesday, 25 December 2007

Christmas Day started with stockings. Lucy had to wait until after her breakfast before she opened hers. Joshua was on hand to help Lucy unwrap her presents.I don't think Lucy really understood what was going on today but I am sure she was aware that it was not a normal day. When it came to opening Christmas presents Lucy had done better than anyone. Her pile of presents was quite impressive. We tried to get her as involved as we could by using her hands to pull at the wrapping paper and putting bits of paper in her hands.Lucy was very lucky and got some lovely presents. She look very cute wearing her new Christmas scarf.After all the excitement of the present opening Lucy relaxed by the tree with her new cuddly polar bear while Christmas dinner was prepared.Lucy watched some Christmas CBeebies on TV while the rest of us sat down to enjoy a huge Christmas feast. It was sad that Lucy couldn't join in but she is just too heavy for me to hold her and eat at the same time. We just had to keep checking that she was OK. When I had finished eating I went and got Lucy so that she could join in with the last part of the meal.In the after dinner lull there was just time for a long cuddle with Lucy's new Auntie Fran before supper.Lucy ended the day cuddling her new polar bear which she still has to name. She was a little tired and sad at bedtime but it wasn't long before she was fast asleep.It was an excellent Christmas Day spent in excellent company. Even though Lucy probably didn't know what was going on, I am sure that she enjoyed the occasion. Tomorrow she will be spoilt with all the family getting together for a big Boxing Day bash.

Monday, 24 December 2007

Finally after all the stress of the run up to Christmas everything was done and we drove down to my cousins house, the car loaded with presents, to spend Christmas with them. We never got round to putting up a tree at home and Lucy was quite taken with all the lights and decorations when we got there.It was nice for everyone just to sit down and relax. A couple of glasses of wine helped as well. Lucy especially liked their huge TV and enjoyed lying in front of it. In true Lucy form she got her cuddles in quick and really enjoyed all the attention.For most of the afternoon she was happy to lie watching the big TV or to to lie under the Christmas tree looking up at the lights.This Christmas was the one when Joshua finally admitted (with some help from his cousins Callum and Carmen), that he didn't really believe that Santa was real any more. Its a bit of a sad milestone but I suppose we don't have to creep around in the middle of the night with his stocking any more, or half eat carrots and mince pies. I made sure that he didn't tell Lucy though. Santa will still come for Lucy for a few years yet.We had no problem putting Lucy to bed, she was really tired. After Lucy went to bed we all joined in playing Christmas Eve games which was fun. After plenty of chocolate and a few glasses of wine it is time to hit the sack. I wonder if Lucy will be dreaming about Santa?

Saturday, 22 December 2007

To day was the day to finish of all the little jobs for Christmas. We started the day by delivering the remaining cards and visiting a few friends that we have not seen for a while. Lucy was happy to sit in her car seat and listen to Take That and Westlife (not my choice!!). In the afternoon there was ironing and present wrapping to look forward to. We all got comfy in the lounge and Dawn and I had a little Christmas sherry. Dawn ironed and I wrapped while Joshua and Lucy watched a DVD.It was actually quite a nice afternoon just to be at home all the family together. Some friends called round later on and as usual Lucy got spoilt with cuddles. She got so comfortable that she eventually fell asleep and had a good nap before waking up for her medicine and supper. Both Joshua and Lucy have been brilliant all day and Joshua even agreed to clean out his hamster's cage. Maybe they have been thinking about being watched by Santa and are trying to earn some last minute points for being good.Whatever the reason it certainly helped Dawn and I to get on with all the final jobs we needed to finish before Christmas. Hopefully the final couple of days can be relatively stress free now that we have done the mad rushing around bit.

Friday, 21 December 2007

As a father most things happen at a slower pace. It takes me longer to consider the consequences of current events and it also takes longer to accept the reality of any given situation. From reading the accounts of other fathers in my situation I know that this is not unusual. It is difficult to be fully involved in all that goes on with Lucy's life partly because there is so much and partly because a lot of it happens when I am not there. Unfortunately by the time you realise that you have become too detached you have already missed too much. The natural response for me was to make sure that I could maintain some kind of stability and that meant working. By default this means that the majority of the organisation and care of Lucy could not be my responsibility as I wasn't here to do it. It is a "Catch 22" situation. I don't believe that this is any different for most fathers thrown into life with a disabled child. Some fathers are able to choose to give up work and become the carer and other fathers do not have a choice and continue to work but forgo the chance to be really involved in the changes that will happen whether they are there or not. I still don't think there is a right and a wrong way to do it because whatever choices you have there are no right ones. I believe we as fathers are simply driven by necessity to provide for our children in the best way we see possible. When all the options we have can't provide what we need to offer, we opt for what we think is the best of a bad choice. I would guess in most cases going back to work is the most common choice and therefore Mother's are left to attend appointments and arrange all the cares. Consequently public services become used to dealing with Mothers and probably public services become Mother orientated. Occasionally Fathers get an odd free day and are able to attend an appointment or a therapy session but this is an exception to the norm and is largely treated as such. So when arrangements are made it is always with the Mother and the Father at most is considered as back up. Unfortunately this circumstantial exclusion of Fathers is overlooked and it seems to be accepted across all the services that provide care and support for disabled children. Father's rarely benefit from any direct support and are largely left to their own devices. At first I also accepted that this was just the way it had to be and just got on with doing my bit not considering what the consequences might be. I think it is easy for men to accept their responsibility if they believe that they are fulfilling some kind of role that is worthwhile and that by doing this their partner is free to fulfill another role that they are not responsible for. It took me too long to realise how wrong this is. There can be no defined roles. Who would then choose to be the Mother who has to deal with the emotions of accepting the role of manager, carer and therapist? When you finally realise that you are not as involved as you want to be, or should be, because you don't have the time or because you have a full time job it is really too late. However unless you are able to commit the time to get involved, you never will be and all the support services will continue to concentrate on their main point of contact which is usually the Mother. Fathers will continue to be treated as "Just Dads" and Mothers will continue to be overwhelmed by a continuous avalanche of appointments, advice and duties. Left for too long this division of roles which is accepted by public support services, can lead to other difficulties. Again this is a common theme for couples like us. I find this so frustrating but up to present I have not found a solution. I believe more focus should be put on support of the family unit rather than simply focussing on the care of a disabled child and the child's primary carer. I wonder what the real consequences of this lack of care have been?

Thursday, 20 December 2007

Lucy has nearly reached the end of her first proper term at School. I am really proud of how far she has come and now I can see that she is growing up fast. She is no longer a little baby. This last week before Christmas has been packed full of exciting activities which I know from reading her school diary. On Monday she was in the final performance of "Christmas Under the Sea" which according to the school notes she really enjoyed. After the performance the class sung Christmas songs with lots of bells for Jingle Bells. On Tuesday Lucy had fun making a picture, painting and playing in the igloo. She also visited the school grotto and joined in with Jingle Bells again. On Wednesday they had a Christmas party so Lucy went to school in party clothes. To quote from her diary,

"Lucy has had such a lovely time at the party. She is in such a good mood - back on form all round!"

She ate a chocolate mini roll which I bet she loved, played "pass the parcel" and enjoyed dancing. She also visited Santa's Grotto at the school and got a present. The school sent home a lovely picture of Lucy with Santa but I haven't got round to scanning it in yet. Today she has been working on the trampoline, playing in the "Soft Play" and joined in making sounds on the resonance board. Every day is different for Lucy at school and everything sounds like so much fun. It is so reassuring to know that Lucy is getting to try lots of different things and that she is having so much fun at the same time. The stimulation that she must be getting is far beyond anything we could provide at home for her. I know I often praise Fairfield School and the people that work there but they deserve every possible accolade for what they achieve. They make such an enormous difference to the quality of life of every child at the school. After this week Lucy is pretty tired but I think this just shows how busy she has been and how much fun she is having. She had her MMR vaccination yesterday so last night she was very grumpy and hadn't managed to sleep it off by this morning. Tonight she seemed a little better but was still a bit miserable which I put down to tiredness. Lucy's friend Iram came to visit this evening to exchange Eid and Christmas presents. Lucy was having her supper when Iram arrived and unfortunately she fell asleep straight afterwards so they didn't get to spend much time together. I also didn't get a chance to get a photo. Lucy was just worn out so I put her to bed and I am pretty sure she will sleep all night (doing her impression of a scarecrow!!!).

Tuesday, 18 December 2007

One of Lucy's favourite places at school is an igloo. It is set up in one corner of the classroom and inside it has all sorts of fun stuff to look at. I think also because it is white, she really enjoys the light inside. When we dropped her off this morning she was a bit grumpy but as soon as I put her in the igloo, her mood changed almost straight away.If we had space at home for a huge artificial igloo, I think I would buy one for her. Lucy has been brewing a cold for the last couple of days and it should be here just in time for Christmas. Hopefully it won't get too grim and we will get away with just the nose goo and the coughing.

Sunday, 16 December 2007

After a busy end to the week we have had a fairly relaxed weekend. We managed to finish off the Christmas shopping and cards so much of the Christmas stress is over. It was difficult because it has been so cold and we have had to wrap Lucy up in a little cocoon in her wheelchair. I probably worry to much about Lucy and the cold but the last thing we want at Christmas is another chest infection. My parents visited today to bring presents and just catch up before Christmas so Lucy was not short of attention.She can be quite manipulative and is getting very good at getting her own way, although I don't think her grandparents mind one bit.As you can see from the photos Lucy was in her element and had a really nice afternoon.

This week we took delivery of Lucy's new Mangar bath seat. She has been using an old baby seat that now she is much too big for. Also due to her size and weight it has become quite a strain to get her in and out of the bath. The new seat will lower her into and raise her out of the bath to save our backs but as with most things it is not so straight forward. The seat is large and awkward to move so it is likely that now we have started to use it, our bath will only be used for Lucy.There are suction pads which keep it fixed to the bottom of the bath and it is quite hard to remove it again. It is also heavy and awkward to lift so from now on the rest of the family will have to make do with the shower. This will affect Joshua more than anyone, who has been used to having his nightly bath since he was born. It is better for Dawn who has really started to struggle when she has to bath Lucy. Lucy is simply getting too heavy. Dawn will now be able to sit Lucy on the raised seat without having to lower her manually into the bath.There is a remote control switch that then lowers the seat into the water. I am glad we are not yet on a water meter because we have to put at least double the amount of water into the bath to get Lucy wet.The seat is just another piece of abnormal equipment that we will have to get used to. I have to remind myself that it is for our benefit and that I should be grateful that we have been given it at all but I can't help seeing it as another reminder that life is difficult and that we need help. Just the fact the I can no longer use my own bath without the difficulty of removing a large piece of equipment highlights how invasive Lucy's requirements have become and it is certainly not going to get any better. I know that this seat is necessary and that it will help us. I also know how lucky we are to live in a country that provides these things for families like ours. It just takes some getting used to before you can view the change in a positive light.

Wednesday, 12 December 2007

Today we went to Lucy's school to watch the early years and primary performance of "Christmas Under the Sea". This was Lucy's first ever school play. I don't know why but I never imagined that Lucy would ever be in a school play. I was really looking forward to it and we made sure we were early so that we could get a front row seat. Lucy was a "Jellyfish" and she looked so cute in her little costume (frizzy top, glittery skirt and tights).I didn't know what to expect from the play and wondered how they were going to pull it off. All the children were wheeled or lead into the hall and put into little groups.There were jellyfish, sharks, dolphins, pirates and all sorts of other sea creatures. Every child was dressed in a costume and the costumes were fantastic. A huge amount of creativity and effort must have gone into coming up with all the different outfits. Even the wheel chairs had been decorated to suit each character. The whole play was done to music and each group had a different act. When it came to the Jellyfish they were wheeled around in a beautifully choreographed dance. It was wonderful to see Lucy taking part and really enjoying herself. She had a huge grin on her face.Lucy's best friend Laila was also a jellyfish and she was having a ball. It was brilliant to see the girls having so much fun.At the end of their routine there was a quick chance for a photo call.The play was about an hour long and it was just an amazing experience. The staff were so enthusiastic and must have been exhausted at the end. I can't express how much admiration I have for them. After the play we all stayed for mince pies and coffee. The girls had done so well and I felt like the proudest father in the world. Lucy and Laila were full of themselves and who knows next stop Broadway????Today has been one of those days that makes me realise how lucky I am to be Lucy's father. She keeps introducing me to new and wonderful experiences. She opens my eyes to the real world that the majority of people will never see and it makes me feel very privileged to be part of it. My little Lucy is a star.

Tuesday, 11 December 2007

I have started reading a book called, "Different Dads", which was recommended to me by "Contact a Family" and it has been comforting to find that I am not so different after all. The book is a series of accounts written by fathers whose children have a wide variety of complications. From the few accounts I have read so far there is a common theme which is so familiar to me. For each account I have read, I have thought, "It could be me writing that!". Each starts with the confusion and despair of being thrown into an unexpected situation. The accounts of the moment of realisation immediately after birth have been especially difficult to read. It has brought back vivid memories of those first hours. Your child is born and nothing is as it is supposed to be. You immediately know that something is not right. When Lucy was born my first thought was, "OK no problem the midwife will pat her on the back, clear her lungs, she will cough and then start crying". Seconds later I knew that I was wrong. My next thought was, "Oh no she's dead, they are going to try and bring her round but its no use, she is already dead!". At the same time I am telling Dawn, "Everything is OK, the baby is fine", knowing how ridiculous it sounds. I couldn't tell Dawn what I really thought, not after the hell she had just been through but I knew she was already thinking it as well. Lucy was not breathing but the midwife still asked me if I wanted to cut the cord. Why did she do that? I watched them carry Lucy's lifeless body to the corner of the room where they started bagging her (They place a mask over the mouth and manually squeeze the bag to try and get air into the lungs). This was obviously having no affect. All the while Dawn was asking what what going on because from where she lay she could see nothing. I kept telling her it was fine and that everything was going to be OK. She said to me,"She's dead isn't she?". I knew I had to keep saying that she wasn't but I didn't believe it. The Pediatrician arrived and tried to use the oxygen mask that was in the corner of the room but it didn't work so Lucy was rushed out of the room to the neonatal unit. We were just left in the room with a midwife who tried to say that it would be OK and then left us. We were both thinking the worst. We asked a few times what was happening but nobody could tell us. Our newborn baby had been taken from us and we didn't know whether she was alive or dead and nobody could tell us what was happening. After what seemed like an eternity somebody came and said that we could go and see her. The relief to know that she was still alive was enormous and at that moment I found myself being optimistic that it had just been a complication and now Lucy would be fine and everything was going to be OK. I should say that at this point Lucy was going to be Holly May and we hadn't really named her yet. When we got to the neonatal unit Lucy was still lifeless but alive. This is a photo taken only a few hours after she was born.We didn't know the implications of what had just happened, we just knew that our new baby girl was alive. We introduced ourselves to her and decided that we had better give her a name in case she didn't pull through. We didn't want her hospital tag not to have a name on it. I don't know why but we changed our minds at the last minute and called her Lucy May and not Holly May. Lucy is such a pretty name and it has always suited her. Lucy is definitely the right name for her and I am so glad now that we changed our minds. We had decided on Holly May as a name after we found out that our baby was going to be a girl and there had never been any real question that it was going to be anything else but when she was born she was just not a Holly. For a long time after and still now sometimes I think about Holly. Holly was the little girl that didn't come to us. She was the little girl that we lost. Lucy came to us and I love her to bits and now I wouldn't be without her but the baby I dreamt about and prepared for when Dawn was pregnant was Holly. I can't help feeling that I lost Holly when Lucy was born and I think it took me longer to accept Lucy because I was grieving for that other little girl. In a small way I probably always will. I loved her but I never got to know her. I pictured her taking her first steps and saying her first words. I imagined her wedding and I thought about meeting her children for the first time. I see her now in all the little three year olds that I meet or see running around the supermarket. I wonder what she would have been like now and I feel cheated that I never got to find out. I feel she was cheated in that she never got to be part of our family and Joshua was cheated because he never got to do all the things he was looking forward to do with her. I have even thought about having a funeral for Holly May, planting a tree, making a small memorial or just something to signify that she is lost to me so that I can move on. These feelings are not without guilt. Every time these thoughts creep into my head I am wracked with guilt about Lucy. I should not see her as unexpected or different and I know that really I don't. I like to think of Lucy as our surprise gift. It is true that I didn't expect to have a daughter like Lucy and if I had expected it I probably would have been filled with dread. What Lucy has given us is something completely new and wonderful. We have had to acclimatise to our new environment but what we have found is that it is becoming a really nice place to be. Lucy shines like the brightest star on all our lives and continues to teach us that everything is not quite as it seems. Just because things are different doesn't mean that they are bad. I look back on the last three and a half years and feel really proud of everything she has achieved and also of everything Lucy has given us. I have a wonderful daughter in Lucy and I wouldn't change her for anything. Holly May will always be a memory of a life I used to have and I won't forget her. I will probably always selfishly miss doing all the normal things I planned to do with her but I like my new life and I love that Lucy is part of it. Lucy May has brought us so much more than I ever expected and she has given us a new and wonderful life. She has taught us to appreciate everything so much more. Every good experience is magnified several times and I no longer take for granted that what I expect is always the best outcome.

Saturday, 8 December 2007

On a cold, windy, rainy Saturday we decided to make an effort to start our Christmas shopping. Lucy and Josh were thrilled! I can't understand that even though people start talking about doing their Christmas shopping in June and July why it seems to get more and more manic at this time of year. We decided to risk the Ridings Shopping Centre in Wakefield. We quickly realised that it's lift facilities are completely inadequate. They only have one lift (that we could find) to service the three main floors and car park and there were queues at each floor. We ended up carrying Lucy in her chair up and down stairs all afternoon. After 2 hectic hours we had managed to all stay friends and buy a few presents as well which I guess is a pretty good result. Lucy was mesmerised by all the sparkly christmas lights and was happy and relaxed all afternoon. Typical girl, just loves shopping!!

We went to the "Big Switch On" at our friends house in the evening. Every year they decorate their house with Christmas lights to raise money for "The Sick Children's Trust" who provide home-from-home accommodation for the families of sick children in the grounds of hospitals. The money raised will be used for Eckersley House at St. James's Hospital, Leeds. We have known a few people who have used Eckersley House and it really is an excellent setup for families especially if they are a long way from home. Our friends Sam and Tony have also used the house when their daughter Bethany has been in St. James. They have set up a website for the annual event where people can donate online (Christmas lights of Mountain Road). Last year I think they raised about £600 and the target for this year is £1000. This year for the day they had arranged a Santa's grotto which was decorated with lots of little lights and tinsel. I think Lucy liked the grotto more than Santa but she went in and got her party bag anyway.Joshua got dressed up as an elf and spent the whole evening being Santa's little helper. There was also a tom-bola stall, buffet on a bus (Tony had arranged for a real bus so that everybody could get out of the cold and have something to eat in the bus) and name the moose! Unfortunately it was quite cold and rainy but even so there were plenty of people and it was a really good night. We had to get Lucy well wrapped up and she didn't complain about being out in the wind and rain, probably because she knew she was getting to stay up past her bed time. She also wanted to help Sam with the collecting. There was a big count down to the switch on so that all their neighbours could make a cup of tea before the surge in the national grid. The number of lights is pretty impressive and must have taken a lot of time and effort to put up.The event went extremely well and at the end of the night the total raised for this years donation had reached about £700 which is excellent. Their target is still £1000 so they will keep accepting donations on the website until the end of December. Sam and Tony's enthusiasm and energy are an inspiration and they should be very proud of what they have achieved.

Friday, 7 December 2007

It has been one of those weeks when you look back and can't think how it got to Friday already. Lucy has had a pretty good week but has been really tired at the end of the day. At least three nights this week it has been a real struggle to give her her supper before she fell asleep. Last night I only manage to give her half her supper before she passed out. She had a full day of school in the morning and nursery in the afternoon and by suppertime she just ran out of energy. I finally gave up on trying to keep her awake and put her to bed. She had a really good nights sleep and I don't think she stirred until this morning. I think she is finally getting back to normal and I have started to see that little spark in her eyes again.

On Wednesday Dawn took Lucy to an ophthalmic appointment (eye check up) at the hospital. They are still trying to establish how much Lucy sees and if she responds to what she sees. The usual stupid questions were asked, "Does Lucy ever reach out and touch anything?", "How does Lucy communicate?" etc. Even if Lucy wanted to reach out and touch something, she isn't able to! Dawn explained that Lucy responds really well to changes in light, particularly from dark to light. We have some lights in her bedroom that she lies under and whenever we turn them on Lucy raises her arms, her expression changes and sometimes she will make little noises as well. Now if that isn't responding to what she sees then I don't know what is. Now she doesn't start clapping her hands or start singing twinkle twinkle little star but for her to react at all is absolutely brilliant and I just love watching her while I turn the lights on and off. Anyway the ophthalmologist turned the lights off in the room and the turned them back on again. Lucy immediately raised her arms and made a few little noises. Dawn could feel Lucy's response as her body stiffened as she raised her arms an inch or two. The ophthalmologist didn't say anything but just looked at Dawn with that shrugged shoulders look on her face. Why do these people always have to make comparisons with what they perceive as a normal reaction from a normal child? Maybe they are just not trained to understand that the same reaction in different children can be expressed in different ways. I can just imagine what was written in Lucy's medical notes. Dawn wasn't in the mood to challenge her and even if she had it would have made no difference. We know that Lucy must be seeing something and that is what is important. I have just started reading a book which has a forward by David Cameron (MP) who has a four year old son with epilepsy and cerebral palsy and he writes,

"The important thing is that you will come to know your child better then anyone else. You certainly need to listen to advice, but you also need to trust your own intuition and judgement".

Dawn found Lucy's lost pair of glasses this morning which we have already replaced, so now Lucy has two pairs of glasses. I see that as a little sign that confirms we are right.

Monday, 3 December 2007

Adaption of your home is something that all families in our position have to face at some point and initially it was very difficult for me to accept. We are now at the stage where builders are coming round to do their site visits before they submit there bids for the work. This has made it very real and it is only going to be a matter of months before the work starts. Having had some time to get used to the idea we have decided that we are going to make the most of it and do as much as we can to make it a lovely place for Lucy to be. Of course we will probably decorate it with a nice girly theme, probably pink because all little girls want pink bedrooms (I think), but we have started to think about more specific sensory ideas. Sensory equipment is not cheap as you will find out if you look through the various catalogues, however it is likely that Lucy is going to spend a lot of time in her new room and it will be really good if we can have a proper sensory room in the house for her. Most of Lucy's vision is in the upper right quadrant so when she is lying in bed she is looking back and to the right. We would like to create a starry night affect with fibre optics on the ceiling and a wall behind her bed which she can enjoy while she is waiting to fall asleep. At the moment she spends an hour or two every other night staring into the darkness and if she had nice twinkly lights to look at I think she would really like it. We have also thought about rotating mirror balls and also a projector which projects slowly rotating images onto the walls and ceiling. If we can also use black-out blinds on the windows then Lucy could use this during the day well. Normally you save up for when your children leave home, go to university or maybe even need their first car, but with Lucy it is more important to provide stimulation and enjoyment for her now. We are still at the ideas stage and are not really sure what we can and can't do. It would be really good if there was someone that could come and show us different options or even design the room for us but I don't even know if such people exist. We will probably just have to use that universal consultant, "Google" and work it out ourselves. Its no big deal, we have been ICU specialists, Physiotherapists, Care Workers, Paramedics, we can deal with epileptic fits and know what dozens of medicines do, so why not Sensory Room Designers as well. At least it has given us something positive to think about and I really can't wait to see what we manage to do with Lucy's room and especially watch her little face when she sees it all for the first time. Any ideas would be gratefully received!!

Sunday, 2 December 2007

Lucy has been struggling with a phlegmy cough for the last week. It has been worse during feeds and when she has her medicine. It is difficult not to get frustrated when something like feeding, which has recently become quite easy, suddenly gets difficult again. It has been like stepping back 2 years when every feed was a marathon battle of will and endurance. There has definitely been some improvement over the last day or 2 and at least her appetite is still fairly healthy. The worry with all the coughing is that she develops another chest infection which would not be good at all. I suppose that this may be a seasonal problem that we will just have to get used to.

For the second Sunday in a row we jumped into the car and made the short trip to my parents for Sunday lunch. Lucy's Aunty Nicky and cousins, Emily and Ashley were also visiting so she was due some extra cuddles. I sometimes think Lucy just moves through life from one cuddle to the next.Emily has always been especially eager to cuddle Lucy and Lucy would sit happily with Emily for as long as she could get away with it.It is so good for Lucy to have regular contact with all her extended family because it gives her the chance to form lots of different kinds of relationships. She will definitely behave differently with different people. It is almost predictable that if Lucy's girl cousins pick her up and play with her she will play happily for as long as they want to. Lucy is a people person and just loves the noise and chaos of a family get together. It is also great for us because Lucy is always entertained and we get a break for a few hours.

Thursday, 29 November 2007

Following the many requests for pictures of "The Badge", this blog is for Joshua, the 2007/2008 Head Boy of St.Saviours Junior School. Lucy could not have a better big brother, she absolutely dotes on Joshua and just loves it when he plays with her. I am so pleased that Joshua has been made to feel special in this way, especially as the whole school voted.

Congratulations Joshua (Head Boy), you do deserve this!

These are just some of the comments and messages for Joshua:

"Well done Josh!"

"Well done Josh - you are a star !!!"

"Congratulations to Josh....what a feather in his cap and well deserved I am sure. From what you write he sounds a most extraordinarily responsible and thoughtful boy for his age."

"Well done on being selected Head Boy at your School. You are obviously a popular and respected boy.Your Great Uncle thinks you are a star.Well Done!!"

"Congratulations Josh!!!Well done on being head boy, I hope you have lots of fun in year 6 because it's a really good year before high school!"

Too often at home Joshua is left on his own or simply neglected but he never complains or blames Lucy. In fact he always manages to put a positive spin on everything. He has always accepted Lucy unconditionally and it is clear that he loves his little sister very much.Lucy told me tonight that she thinks her big brother is brilliant and she is so proud of him.

Tuesday, 27 November 2007

I had to leave early this morning to catch the train to London so my parents were on hand to take over and sort out Joshua and Lucy. They are so good at just stepping in whenever we need them. They have heard a lot about Lucy's school but it was the first time that they had actually been inside. I told them the routine and made sure that they knew to wait until 9:00 to take Lucy in. Their first impressions were the same as mine, what a fantastic, friendly place. They were welcomed by an "extremely nice man" at the door who greeted Lucy by name and ushered them into the school. They thought he was one of the bus drivers but when they described him to me there was only one person it could have been, Richard the headmaster. I think Fairfield School must be the only school where the headmaster of the school walks around with a beaming smile on his face welcoming the children into school. When they got to Lucy's classroom they were welcomed by Jane, Lucy's teacher ("Isn't she nice" they said) and got to meet some of Lucy's classmates. They were really taken with one little boy who toddled in with his walking frame and actually said hello to them. Jane offered to show them round the school tomorrow if they go in a little early which is so nice. Nothing is too much effort at Fairfields. I am glad that they have had the opportunity to see where Lucy spends so much time and experience the brilliant atmosphere that Fairfields provides.

I didn't arrive home until about 20:00 and Lucy was already falling asleep. There was a hot meal waiting for me which was so nice and I decided that it was too late to start Lucy's exercises, so today she and I have had a day off. It is a shame because I am really keen to keep up with the therapy every day, even if there is not enough time to fit in the whole program. Today I guess it just didn't work out, but then if we start to treat it like too much of a regime it will become a burden. Sometimes there are just not enough hours in the day and I am not going to feel guilty about that. I do feel like I have missed a day but work had to come first unfortunately. Joshua still had his school uniform on when I got home and I quickly realised why. At school this morning he had been presented with his Head Boy badge in front of the whole school. At the end of last term he was voted Head boy by the all children at the school. I am so proud of him and he could not be more pleased or proud of himself than he was tonight. He deserves it and it is so nice that he can now feel a little bit special for the rest of the school year. It was a long day away from home but at least I didn't miss seeing Joshua and Lucy before they went to bed. I am just thankful that my parents were around to do what they do best.

Monday, 26 November 2007

It was about 22:00 today before it struck me that there has been no time at all today. How many days pass that merely consist of moving from one task to another? Whole weeks can go by like this and at the end of it you look back and realise that you can't remember having any time at all. Today started at 6:00am getting Joshua and Lucy ready for school. Well actually getting Lucy ready for school because Joshua pretty much takes care of himself these days. About 5 minutes before it was time to leave I realised that I had not shaved, brushed my hair or teeth, I had no time. I arrived home after the school run at about 9:30 already late to start work (luckily I was working from home today). The next time I looked at my watch it was time to think about picking them up again. 18:30 back at home, medicine, bath, supper and then exercises. Again Joshua took care of himself. I had to get him to do some maths homework while I gave Lucy her supper. I finished feeding her at about 19:30 and gave her 20mins before starting her exercises. My parents arrived as they are looking after things tomorrow as I have to go to London to work and my mother offered to cook which was nice. While she did I started the exercises and finished them after we had eaten. I didn't quite manage the whole program and finished at 21:00 so I could put Lucy to bed. Joshua made his own way to bed and was waiting to have his light turned off. There were a few minor arrangements to sort out for tomorrow like the car seat and pram etc which were still left to do before having a sit down and a cup of coffee to end the day. Now it is late but I feel like I need some time to just sit and unwind although probably I should be in bed recharging for tomorrow.

I can remember a time when I used to enjoy just sitting doing nothing and thinking but this just seems like a waste of time now. Only when it is late and quiet do I allow myself this luxury. It is so easy to get consumed by the constant race from one duty/job/chore/obligation to the next that you forget why you are doing it and when this happens you find yourself questioning what you are doing. Life becomes a bit like a job and I don't care what anybody says, jobs can be enjoyable but they are not about having fun. We work so that when we are not working we can have fun. The problem is is that when work takes all your time you are too exhausted to be bothered with fun. I am probably the worst culprit for taking life a bit too seriously and not making enough time to have fun. I guess that makes me a bit grumpy sometimes and leads to rambles like this. Listen to me moaning, I have only been left alone for a few days, Dawn has been doing this for 3 1/2 years!

Sunday, 25 November 2007

With the promise of a good Sunday feed we piled in to the car this morning and went to visit my parents. Lucy had to eat first so I took the splattering while Granny finished off the Sunday lunch. Feeding Lucy at the moment is like it was a couple of years ago, there always seems to be more food coming out her mouth than you put in.I eventually managed to shovel it all in and as soon as I finished she stopped the arching and coughing and settled down on an improvised bed in front of the TV. She watched it for a while before closing her eyes for a Sunday afternoon nap.She has been a bit constipated for the last 24-36 hours and I am sure she has been in some discomfort. It always makes her a bit grumpy. Sometimes we have to help her out which is not the most pleasant job in the world but up until this afternoon we were still expecting. After lunch I took Joshua to the cinema to see Stardust while Granny looked after Lucy and when we got back we received the happy news that Lucy had managed to part with her discomfort or at least some of it. This should make her slightly better company particularly at feeding time. I still had not had any time to do Lucy's therapy exercises so decided to get home and do them after bath and supper time. She actually behaved quite well and I managed to get through the whole set while Joshua played Buzz on his playstation.She must have been tired because 15 minutes into the exercises she fell asleep and stayed asleep for at least half the time.By the time I finished it was nearly 9 o'clock. Now Joshua and Lucy are both in bed I can start on the ironing and maybe even empty the dishwasher. This single parent life is no picnic.

Lucy

About Us

My name is Neil and I have 2 children Joshua and Lucy. Lucy has severe Cerebral Palsy and Epilepsy. She is unable to co-ordinate normal movement or communicate in the conventional way. She is a beautiful little girl who has had more than her fair share of bad luck and I am are immensely proud of all she has achieved.Email Me here